Patient Advocates in Cancer Research: European Patients’ Perspective, presented by Jan Geissler (Twitter @jangeissler) at ISOQOL 19th Annual Conference, Budapast, 26 Oct 2012
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internetpatvocates
"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.
The benefits of patient involvement in research and development (RE:ACT Congr...jangeissler
This document discusses the benefits of patient involvement in health research and development. It notes that innovation is transforming lives but more breakthroughs are still needed. Patients can provide unique perspectives to improve trial design and address unmet needs. However, public distrust and lack of knowledge limit patient participation in research. The document advocates for greater patient involvement at all stages of research, from setting priorities to disseminating results. It highlights the EUPATI initiative which aims to educate patients and the public about medicines research through training courses, educational tools, and national platforms. The goal is empowering patients as partners in research.
Access to treatment, care and clinical trials by patients with rare cancers...patvocates
"Access to treatment, care and clinical trials by patients with rare cancers", presented by Jan Geissler (Twitter @jangeissler) at ESMO congress in Vienna, 30 Sept 2012
The role of patients and healthcare providers in translational medicinejangeissler
The role of patients and healthcare providers in translational medicine, presented by Jan Geissler at the European Commission's Personalized Medicine Conference 2016 on 1 June 2016 in Brussels
This document discusses biobanks and registries, their value for research, and opportunities for patient involvement. It describes how biobanks store biological samples and associated data to support research. Registries collect standardized clinical data on patient populations over time. Both require governance and quality management. The document presents two cases where patient organizations were involved in biobank and registry co-creation and governance to help advance research.
Patient engagement in clinical trials Martin Kelly
The document discusses improving patient engagement in clinical trials through digital methods. Only 2-5% of cancer patients currently participate in clinical trials. The top 3 solutions identified to engage patients were: 1) a clinical trial finder for patients to inform them of available trials, 2) virtual clinical trials conducted entirely online, and 3) tools to personalize clinical trials to individual patient needs/preferences. The document reviews several companies providing these types of solutions and proposes an experiment partnering with a CRO to test if a digital intervention increases patient enrollment and retention in a clinical trial compared to a control group without a digital intervention.
This document discusses patient-reported outcomes and quality of life measures that are important for evaluating the impact of disease and treatment from the patient's perspective. It provides background on common quality of life domains assessed and examples of generic, disease-specific, and symptom-specific patient-reported outcome measures. The document also describes Myeloma UK's experience developing a myeloma-specific patient-reported outcome scale called MyPOS to capture aspects beyond just symptoms that are important to myeloma patients' quality of life.
The 9th Annual Patient Summit 2012 in London discussed the emergence of e-patients and their role in medical research and decision making. It highlighted patients' need for information to understand their disease and treatment options. The European Patients' Academy (EUPATI) was presented as a pan-European initiative to train patient advocates and provide educational resources to empower patients and facilitate their involvement in medical research.
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internetpatvocates
"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.
The benefits of patient involvement in research and development (RE:ACT Congr...jangeissler
This document discusses the benefits of patient involvement in health research and development. It notes that innovation is transforming lives but more breakthroughs are still needed. Patients can provide unique perspectives to improve trial design and address unmet needs. However, public distrust and lack of knowledge limit patient participation in research. The document advocates for greater patient involvement at all stages of research, from setting priorities to disseminating results. It highlights the EUPATI initiative which aims to educate patients and the public about medicines research through training courses, educational tools, and national platforms. The goal is empowering patients as partners in research.
Access to treatment, care and clinical trials by patients with rare cancers...patvocates
"Access to treatment, care and clinical trials by patients with rare cancers", presented by Jan Geissler (Twitter @jangeissler) at ESMO congress in Vienna, 30 Sept 2012
The role of patients and healthcare providers in translational medicinejangeissler
The role of patients and healthcare providers in translational medicine, presented by Jan Geissler at the European Commission's Personalized Medicine Conference 2016 on 1 June 2016 in Brussels
This document discusses biobanks and registries, their value for research, and opportunities for patient involvement. It describes how biobanks store biological samples and associated data to support research. Registries collect standardized clinical data on patient populations over time. Both require governance and quality management. The document presents two cases where patient organizations were involved in biobank and registry co-creation and governance to help advance research.
Patient engagement in clinical trials Martin Kelly
The document discusses improving patient engagement in clinical trials through digital methods. Only 2-5% of cancer patients currently participate in clinical trials. The top 3 solutions identified to engage patients were: 1) a clinical trial finder for patients to inform them of available trials, 2) virtual clinical trials conducted entirely online, and 3) tools to personalize clinical trials to individual patient needs/preferences. The document reviews several companies providing these types of solutions and proposes an experiment partnering with a CRO to test if a digital intervention increases patient enrollment and retention in a clinical trial compared to a control group without a digital intervention.
This document discusses patient-reported outcomes and quality of life measures that are important for evaluating the impact of disease and treatment from the patient's perspective. It provides background on common quality of life domains assessed and examples of generic, disease-specific, and symptom-specific patient-reported outcome measures. The document also describes Myeloma UK's experience developing a myeloma-specific patient-reported outcome scale called MyPOS to capture aspects beyond just symptoms that are important to myeloma patients' quality of life.
The 9th Annual Patient Summit 2012 in London discussed the emergence of e-patients and their role in medical research and decision making. It highlighted patients' need for information to understand their disease and treatment options. The European Patients' Academy (EUPATI) was presented as a pan-European initiative to train patient advocates and provide educational resources to empower patients and facilitate their involvement in medical research.
1) Drug development involves multiple phases of clinical trials in humans (phases I-IV) to test dosing, safety and efficacy in an increasing number of patients before regulatory approval and market access.
2) Patient involvement in clinical research is important to ensure trials address patient priorities and perspectives on risk/benefit, endpoints, and trial design elements like inclusion criteria.
3) Key elements of a clinical trial protocol include type of comparisons, randomization, blinding, endpoints, inclusion/exclusion criteria, schedule of events, informed consent process, and patient reported outcomes.
This document discusses challenges in interpreting health-related quality of life (HRQOL) findings across cancer clinical trials. Two hypothetical trials that tested the same treatment showed conflicting HRQOL results. This was because the trials may have assessed different HRQOL areas, endpoints, handling of missing data, and analysis populations. To address this, international collaboration is needed to set standards for HRQOL analyses in cancer trials. This would help ensure HRQOL questions, designs, analyses and interpretations are consistent across trials.
Patient Reported Outcomes (PRO) - Challenge and potential solutions.
Why and how can medical device and pharmaceutical companies, as well as the entire healthcare sector, leverage patient engagement with next-generation ePRO solutions?
Discover our white paper...
The document discusses how patients can find, select, and shape clinical trials in order to identify research that is most beneficial. It emphasizes that patients should: understand their treatment options and scientific landscape; carefully evaluate trial design and motivations; and recognize that various stakeholders have competing interests. The goal is not just increasing the number of trials, but improving trial quality so they answer patients' needs. Patients are encouraged to engage with research groups long-term to help guide trial design toward options that offer meaningful benefit.
This document discusses patient involvement at the Medicines Evaluation Board (MEB) in the Netherlands. It makes three key points:
1. The MEB focuses on involving patients throughout the entire life cycle of a medicinal product to ensure the patient perspective is considered. Meetings are held 3-4 times per year and minutes are published online.
2. Strategies for patient involvement at the MEB include having a board member represent the patient perspective, consulting patient organizations on regulatory decisions and guidelines, and creating an online portal for patients.
3. Eliciting individual patient preferences could help identify subgroups with similar preferences to better tailor regulatory decisions and highlight situations where regulator and patient values differ requiring improved communication.
This document discusses the need for a paradigm shift in public understanding of medical research and development (R&D) to better meet patient needs. It notes that current "success stories" only help small numbers of patients, and that patients urgently need therapeutic innovation. It argues that innovation in areas like cancer, rare diseases, clinical trial design, and personalized medicine requires new approaches in R&D. It also emphasizes the important role patient organizations can play by providing insights into patient experiences and priorities to help drive research. Finally, it introduces the European Patients' Academy as an initiative aiming to train patient advocates and foster collaborative efforts to make drug development more effective.
Evaluation of the Inpatient Hospital Experience while on PrecautionsKathryn Cannon
This study assessed patient satisfaction of those under contact/airborne isolation precautions versus those not under precautions at Yale-New Haven Hospital. 87 patients were interviewed using a survey measuring satisfaction with communication, treatment explanations, help from staff, pain control, and overall experience. Small variations were found between groups in nurse communication, timely help, pain control, and overall satisfaction. No significant difference was seen in doctor communication, but those under precautions expressed higher satisfaction with treatment explanations. The study aimed to understand differences to improve hospital processes and performance under new CMS reimbursement policies tied to patient satisfaction.
1) The study aims to understand barriers to obtaining oral cancer treatment and the impact on patient experience by assessing financial toxicity, psychosocial burden, and factors associated with treatment satisfaction.
2) Preliminary findings show that while wait times and costs cause distress, receiving treatment reduces worry. Higher costs were not significantly associated with more distress. Patients waited an average of 8-9 days for medications.
3) Increased costs and wait times may be linked to greater psychosocial stress, though receiving treatment lessened worry. Further analysis of factors like memory, mood, and finances could provide more insights into adherence.
This document provides an overview of clinical trial accrual challenges and discusses how social media could potentially help address some of these challenges. It summarizes the National Clinical Trials Network (NCTN) and reviews major accrual barriers experienced by institutions, investigators, and patients. These include a lack of trial awareness, preference for standard care over trials, and concerns about side effects. The document then describes NCI's use of Twitter to promote NCTN trials and poses questions about how social media could enhance awareness of cancer clinical trials.
The document discusses strategies for effectively recruiting and retaining clinical trial participants based on focus group research. It identifies participants' key information needs, concerns, and motivations and barriers to participation. Addressing potential side effects, providing user-friendly study information for families, and maintaining ongoing communication are important. Participants want expenses covered and expect updates, resources, and a supportive community experience. Barriers include distance, inflexible hours, and burdensome visits. Tailoring the experience to individual needs and building rapport with empathetic staff is critical to recruitment and retention.
Stem cell therapy is a rapidly growing industry as more people seek alternatives to traditional medicine. PlacidWay is a medical tourism company that connects patients with stem cell treatment centers around the world. It provides education on stem cell therapy, coordinates travel and treatment logistics, and markets centers to a global patient base. This globalizes stem cell innovations and gives centers new revenue channels to generate more business.
This document discusses guidelines for pan-Canadian newborn screening. It defines screening as applying tests to asymptomatic populations to identify those who need further investigation or treatment for better outcomes. Diagnosis involves evaluating symptomatic patients to confirm or rule out disease. The document outlines elements of an effective screening system, including education, testing, follow-up, data management, and governance. It discusses the use of dried blood spot samples, and notes work by a federal-provincial-territorial group to establish consensus on minimum screening panels and policies around sample storage and secondary use.
My talk at the Scientific Research Day of Medical colleges, UQU
5 March 2019
where I presented my publication (Patient-Centered Pharmacovigilance: A review)
This study compared information on medication use and drug-related problems (DRPs) obtained via a patient questionnaire versus a patient interview. 97 patients aged 65+ years with polypharmacy or geriatric problems completed the questionnaire and were then interviewed. There was 87.6% agreement between the questionnaire and interview for reported medications. More medications and DRPs were reported in interviews than questionnaires. Agreement on complete medication lists was 45.4% of patients. Vulnerable patients with many chronic diseases or medications showed lower agreement. The questionnaire provided reasonably similar but not identical information as interviews and may be suitable for medication reviews in most patients.
SHARE Presentation: Maximizing Treatment Options -- What to Know When Conside...bkling
Current and former clinical trial participants discuss decision-making from a patient's perspective. What factors should you consider when choosing a clinical trial? What are the potential benefits of participating? What misconceptions might discourage people from seeking clinical trials? When is it best not to participate? Panelists include women living with metastatic breast and ovarian cancers.
These guidelines were developed by an international expert panel to provide evidence-based recommendations for the management of vulvar cancer. The guidelines cover diagnosis and referral, staging, preoperative investigations, surgical treatment including sentinel lymph node biopsy and groin lymphadenectomy, radiation therapy, chemotherapy, treatment of recurrent disease, and follow-up. The recommendations are based on a systematic review of the literature and expert consensus where evidence was lacking. An international review process was used to evaluate and finalize the guidelines.
Our main involvement with your clinical research recruitment program concludes with processing the responses to your mailer. As our staff members direct the respondents to your site, you can begin conducting final interviews to complete the clinical trial recruitment process.
Impact of health education on tuberculosis drug adherenceSkillet Tony
Adherence is defined as the extent to which patients follow the instructions they are given for prescribed treatments. Until recently, adherence expertise was hard to find, assemble and empower. The study shall solely aim at investigating the influence of patients’ health education on Tuberculosis drug adherence. It will be guided by the following specific objectives; to identify the level of adherence among TB patients at MTRH, to assess the level of patient’s health education on TB drugs, to identify barriers of TB education, to investigate the challenges facing TB patients on treatment and to determine the level of training given to health workers on TB drug adherence. These objectives will enable the researcher to elaborate more on the topic and ensure that those who read through this research shall have a better perspective on the effects of health education on tuberculosis drug adherence. It will take place between the months of July and August. The study will target 17 doctors, 119 nurses and 143 patients of Tuberculosis. The study will employ a case study research design. The case study will enable the researcher be able to collected detailed information as to the influence of patients’ health education on TB drug adherence. The study will employ purposive sampling to sample the doctors and simple random sampling to select both the nurses and the patients who will participate in the study. The researcher will use one research instrument to collect data from the respondents selected to participate in the study which is a questionnaire that will be issued to the respondents on the day of the data collection.
1. Marwa Abel-Razek Abdel-Aziz is a general practitioner seeking a suitable job in Dubai. She has over 6 years of experience working in clinics in Dubai and Egypt.
2. Her experience includes family medicine, minor procedures, immunizations, dermatology, and aesthetic medicine including laser treatments and cosmetic procedures.
3. She is fluent in English and Arabic and has a bachelor's degree in general medicine and surgery from Cairo University as well as several diplomas and certifications.
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...patvocates
"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012
Partnering with Patients: Designing, Participating in and Reporting Health Ou...patvocates
Partnering with Patients: Designing, Participating in and Reporting Health Outcomes - presented by Jan Geissler at ISPOR 19th ANNUAL CONGRESS in Dublin on 6 Nov 2013
1) Drug development involves multiple phases of clinical trials in humans (phases I-IV) to test dosing, safety and efficacy in an increasing number of patients before regulatory approval and market access.
2) Patient involvement in clinical research is important to ensure trials address patient priorities and perspectives on risk/benefit, endpoints, and trial design elements like inclusion criteria.
3) Key elements of a clinical trial protocol include type of comparisons, randomization, blinding, endpoints, inclusion/exclusion criteria, schedule of events, informed consent process, and patient reported outcomes.
This document discusses challenges in interpreting health-related quality of life (HRQOL) findings across cancer clinical trials. Two hypothetical trials that tested the same treatment showed conflicting HRQOL results. This was because the trials may have assessed different HRQOL areas, endpoints, handling of missing data, and analysis populations. To address this, international collaboration is needed to set standards for HRQOL analyses in cancer trials. This would help ensure HRQOL questions, designs, analyses and interpretations are consistent across trials.
Patient Reported Outcomes (PRO) - Challenge and potential solutions.
Why and how can medical device and pharmaceutical companies, as well as the entire healthcare sector, leverage patient engagement with next-generation ePRO solutions?
Discover our white paper...
The document discusses how patients can find, select, and shape clinical trials in order to identify research that is most beneficial. It emphasizes that patients should: understand their treatment options and scientific landscape; carefully evaluate trial design and motivations; and recognize that various stakeholders have competing interests. The goal is not just increasing the number of trials, but improving trial quality so they answer patients' needs. Patients are encouraged to engage with research groups long-term to help guide trial design toward options that offer meaningful benefit.
This document discusses patient involvement at the Medicines Evaluation Board (MEB) in the Netherlands. It makes three key points:
1. The MEB focuses on involving patients throughout the entire life cycle of a medicinal product to ensure the patient perspective is considered. Meetings are held 3-4 times per year and minutes are published online.
2. Strategies for patient involvement at the MEB include having a board member represent the patient perspective, consulting patient organizations on regulatory decisions and guidelines, and creating an online portal for patients.
3. Eliciting individual patient preferences could help identify subgroups with similar preferences to better tailor regulatory decisions and highlight situations where regulator and patient values differ requiring improved communication.
This document discusses the need for a paradigm shift in public understanding of medical research and development (R&D) to better meet patient needs. It notes that current "success stories" only help small numbers of patients, and that patients urgently need therapeutic innovation. It argues that innovation in areas like cancer, rare diseases, clinical trial design, and personalized medicine requires new approaches in R&D. It also emphasizes the important role patient organizations can play by providing insights into patient experiences and priorities to help drive research. Finally, it introduces the European Patients' Academy as an initiative aiming to train patient advocates and foster collaborative efforts to make drug development more effective.
Evaluation of the Inpatient Hospital Experience while on PrecautionsKathryn Cannon
This study assessed patient satisfaction of those under contact/airborne isolation precautions versus those not under precautions at Yale-New Haven Hospital. 87 patients were interviewed using a survey measuring satisfaction with communication, treatment explanations, help from staff, pain control, and overall experience. Small variations were found between groups in nurse communication, timely help, pain control, and overall satisfaction. No significant difference was seen in doctor communication, but those under precautions expressed higher satisfaction with treatment explanations. The study aimed to understand differences to improve hospital processes and performance under new CMS reimbursement policies tied to patient satisfaction.
1) The study aims to understand barriers to obtaining oral cancer treatment and the impact on patient experience by assessing financial toxicity, psychosocial burden, and factors associated with treatment satisfaction.
2) Preliminary findings show that while wait times and costs cause distress, receiving treatment reduces worry. Higher costs were not significantly associated with more distress. Patients waited an average of 8-9 days for medications.
3) Increased costs and wait times may be linked to greater psychosocial stress, though receiving treatment lessened worry. Further analysis of factors like memory, mood, and finances could provide more insights into adherence.
This document provides an overview of clinical trial accrual challenges and discusses how social media could potentially help address some of these challenges. It summarizes the National Clinical Trials Network (NCTN) and reviews major accrual barriers experienced by institutions, investigators, and patients. These include a lack of trial awareness, preference for standard care over trials, and concerns about side effects. The document then describes NCI's use of Twitter to promote NCTN trials and poses questions about how social media could enhance awareness of cancer clinical trials.
The document discusses strategies for effectively recruiting and retaining clinical trial participants based on focus group research. It identifies participants' key information needs, concerns, and motivations and barriers to participation. Addressing potential side effects, providing user-friendly study information for families, and maintaining ongoing communication are important. Participants want expenses covered and expect updates, resources, and a supportive community experience. Barriers include distance, inflexible hours, and burdensome visits. Tailoring the experience to individual needs and building rapport with empathetic staff is critical to recruitment and retention.
Stem cell therapy is a rapidly growing industry as more people seek alternatives to traditional medicine. PlacidWay is a medical tourism company that connects patients with stem cell treatment centers around the world. It provides education on stem cell therapy, coordinates travel and treatment logistics, and markets centers to a global patient base. This globalizes stem cell innovations and gives centers new revenue channels to generate more business.
This document discusses guidelines for pan-Canadian newborn screening. It defines screening as applying tests to asymptomatic populations to identify those who need further investigation or treatment for better outcomes. Diagnosis involves evaluating symptomatic patients to confirm or rule out disease. The document outlines elements of an effective screening system, including education, testing, follow-up, data management, and governance. It discusses the use of dried blood spot samples, and notes work by a federal-provincial-territorial group to establish consensus on minimum screening panels and policies around sample storage and secondary use.
My talk at the Scientific Research Day of Medical colleges, UQU
5 March 2019
where I presented my publication (Patient-Centered Pharmacovigilance: A review)
This study compared information on medication use and drug-related problems (DRPs) obtained via a patient questionnaire versus a patient interview. 97 patients aged 65+ years with polypharmacy or geriatric problems completed the questionnaire and were then interviewed. There was 87.6% agreement between the questionnaire and interview for reported medications. More medications and DRPs were reported in interviews than questionnaires. Agreement on complete medication lists was 45.4% of patients. Vulnerable patients with many chronic diseases or medications showed lower agreement. The questionnaire provided reasonably similar but not identical information as interviews and may be suitable for medication reviews in most patients.
SHARE Presentation: Maximizing Treatment Options -- What to Know When Conside...bkling
Current and former clinical trial participants discuss decision-making from a patient's perspective. What factors should you consider when choosing a clinical trial? What are the potential benefits of participating? What misconceptions might discourage people from seeking clinical trials? When is it best not to participate? Panelists include women living with metastatic breast and ovarian cancers.
These guidelines were developed by an international expert panel to provide evidence-based recommendations for the management of vulvar cancer. The guidelines cover diagnosis and referral, staging, preoperative investigations, surgical treatment including sentinel lymph node biopsy and groin lymphadenectomy, radiation therapy, chemotherapy, treatment of recurrent disease, and follow-up. The recommendations are based on a systematic review of the literature and expert consensus where evidence was lacking. An international review process was used to evaluate and finalize the guidelines.
Our main involvement with your clinical research recruitment program concludes with processing the responses to your mailer. As our staff members direct the respondents to your site, you can begin conducting final interviews to complete the clinical trial recruitment process.
Impact of health education on tuberculosis drug adherenceSkillet Tony
Adherence is defined as the extent to which patients follow the instructions they are given for prescribed treatments. Until recently, adherence expertise was hard to find, assemble and empower. The study shall solely aim at investigating the influence of patients’ health education on Tuberculosis drug adherence. It will be guided by the following specific objectives; to identify the level of adherence among TB patients at MTRH, to assess the level of patient’s health education on TB drugs, to identify barriers of TB education, to investigate the challenges facing TB patients on treatment and to determine the level of training given to health workers on TB drug adherence. These objectives will enable the researcher to elaborate more on the topic and ensure that those who read through this research shall have a better perspective on the effects of health education on tuberculosis drug adherence. It will take place between the months of July and August. The study will target 17 doctors, 119 nurses and 143 patients of Tuberculosis. The study will employ a case study research design. The case study will enable the researcher be able to collected detailed information as to the influence of patients’ health education on TB drug adherence. The study will employ purposive sampling to sample the doctors and simple random sampling to select both the nurses and the patients who will participate in the study. The researcher will use one research instrument to collect data from the respondents selected to participate in the study which is a questionnaire that will be issued to the respondents on the day of the data collection.
1. Marwa Abel-Razek Abdel-Aziz is a general practitioner seeking a suitable job in Dubai. She has over 6 years of experience working in clinics in Dubai and Egypt.
2. Her experience includes family medicine, minor procedures, immunizations, dermatology, and aesthetic medicine including laser treatments and cosmetic procedures.
3. She is fluent in English and Arabic and has a bachelor's degree in general medicine and surgery from Cairo University as well as several diplomas and certifications.
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...patvocates
"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012
Partnering with Patients: Designing, Participating in and Reporting Health Ou...patvocates
Partnering with Patients: Designing, Participating in and Reporting Health Outcomes - presented by Jan Geissler at ISPOR 19th ANNUAL CONGRESS in Dublin on 6 Nov 2013
Education of patients (advocates) on R&D: European Patients’ Academy EUPATI...jangeissler
"Education of patients (advocates) on R&D: European Patients’ Academy EUPATI", presented by Jan Geissler at the Careum Congress on 18 March 2014 in Basel
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
This document discusses increasing patient involvement in medical research and development. It notes that the medical landscape is transforming rapidly through innovations like personalized medicine and biomarkers. While this benefits patients, it also means smaller trial populations and a need for more post-marketing data. The document advocates for increasing patient involvement in areas like clinical trial design, setting research priorities, measuring quality of life, and pharmaceutical policy. It highlights the European Patients' Academy (EUPATI) project, which aims to empower patients through education on medical research and development processes in order to facilitate greater patient engagement.
2010 11 13 european cme forum jan geissler 1.5jangeissler
This document discusses how patient advocacy groups can strengthen medical education and best practices. It notes that patient groups can provide complementary perspectives to medical professionals by sharing their experiences living with diseases. They can help improve patient-doctor communication and identify unmet patient needs. The document advocates for greater involvement of patient voices at scientific conferences and in educating doctors and nurses, to provide more holistic and patient-centric care.
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
European Patient Perspective on Access and Innovation with Multiplex Genomic ...jangeissler
European Patient Perspective on Access and Innovation with Multiplex Genomic Testing, presented by Jan Geissler at ASCO 2018 in Chicago, USA, on 3 June 2018
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
A presentation delivered by IPPOSI CEO, Derick Mitchell at the University College Dublin PharmTox Society event on Clinical Trials in Ireland on March 6th, 2017
ECCO Oncopolicy Forum - and why patients as partners matter in personalized m...patvocates
Presentation at meeting of the European Commissions "Cancer Support Group" on 25 Sept 2012, reporting about the ECCO Oncopolicy Forum 2012 and why patients as partners matter in personalized medicine - by Jan Geissler (twitter @jangeissler)
European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 ...EUPATI
European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013, presented by Jan Geissler (@jangeissler), Director EUPATI (@EUPATIents) at the IMI's "Patient Focus" meeting, convening patient leaders from across Europe
Patient advocacy groups play an important role in supporting rare cancer patients and influencing healthcare policy and research. They provide crucial information to help patients make informed decisions. They also advocate for patient needs and priorities to be addressed in policy and research. Advocacy groups can contribute to research by identifying important issues, helping with patient recruitment and monitoring, and ensuring research results are disseminated. International rare cancer advocacy organizations collaborate to support patients globally.
The patient voice: turning health policy into opportunity - Jan Geissler - ES...patvocates
Presentation on how the patient voice can turn health policy into advocacy opportunities to improve the life of patients. Presented by Jan Geissler, Co-founder of CML Advocates Network, at the Patient Seminar of the European Society of Gynaecological Oncology (ESGO) in Liverpool on 19 Sept 2013
The document summarizes the European Patients' Academy on Therapeutic Innovation (EUPATI) project. EUPATI aims to (1) develop and disseminate education on medicines research and development to patients and the public, (2) build competency among patient advocates, and (3) create a public library on patient information. By empowering patients, EUPATI seeks to facilitate greater patient involvement in research and development to support various stakeholders. Running from 2012 to 2017, EUPATI's consortium of 29 members is funded by the Innovative Medicines Initiative to develop objective and credible educational resources.
How to communicate scientific and medical information to patients, advocates ...jangeissler
How to communicate scientific and medical information to patients, advocates and caregivers, presented by Jan Geissler at the European Medical Writer's Symposium (EMWA) on 12 May 2016
The e-patient: empowered or overwhelmed? Patient's perspective on new technol...jangeissler
"The e-patient: empowered or overwhelmed? Patient's perspective on new technologies", presented by Jan Geissler at EFGCP Annual Conference 2013 on "Virtual Future: Ethical dimensions of emerging technologies in clinical trials and research" on 29 January 2013 in Brussels
This document discusses the RESPECT project which aims to improve child participation in clinical trials. It outlines the project partners and goals of facilitating medicine development for children. The project gathered input from patients, clinicians, and researchers to identify needs and best practices. Key recommendations include increasing patient empowerment through partnership with clinical staff, representation in ethics committees, and transparency. Establishing patient organizations and oversight can also advocate for patients and evaluate trial experiences and impacts. Providing educational resources can further empower participants in clinical trials.
iCMLf Forum at ASH: Introductory Presentationpatvocates
The iCMLf was established in 2009 as a charitable foundation to improve outcomes for patients with chronic myeloid leukemia globally. It aims to foster global clinical and research collaborations and improve clinical practice and disease monitoring. The iCMLf Virtual Education Program provides CML education and management updates through webcasts. It also organizes an annual forum and networking meeting. The Emerging Regions Support and Partnership Program facilitates knowledge sharing through preceptorships and provides grants and support to increase diagnostic capabilities in emerging regions.
Europe has an increasing cancer population due to aging and a diverse population. Cancer information comes from many conflicting sources without quality assurance or integration, leading to poor communication which is a key public policy issue. The purpose is to establish an efficient communications portal for all involved in cancer through a community platform and search engine, addressing the needs of scientists, clinicians, and patients to find clinical trials, research databases, rare tissues, funded projects, drug information, deadlines, and patient social networks.
Costello - Morning Tutorial on Social Media - RARE CONNECTpatvocates
Denis Costello, EURORDIS, presenting on RARECONNECT, the Rare Disease / Rare Cancer Community Platform for patient organisations, at EMCC in Stockholm on 25 Sept 2011
Von Bubnoff - LebensMUT Krebsinformationstag, 23 Juli 2011patvocates
Krebspatienteninformationstag von LebensMUT, 23.07.2011, Grosshadern bei München. Vortrag von Dr. von Bubnoff über Grundlagen der CML: Biologie und Therapie
Travel Clinic Cardiff: Health Advice for International TravelersNX Healthcare
Travel Clinic Cardiff offers comprehensive travel health services, including vaccinations, travel advice, and preventive care for international travelers. Our expert team ensures you are well-prepared and protected for your journey, providing personalized consultations tailored to your destination. Conveniently located in Cardiff, we help you travel with confidence and peace of mind. Visit us: www.nxhealthcare.co.uk
Kosmoderma Academy, a leading institution in the field of dermatology and aesthetics, offers comprehensive courses in cosmetology and trichology. Our specialized courses on PRP (Hair), DR+Growth Factor, GFC, and Qr678 are designed to equip practitioners with advanced skills and knowledge to excel in hair restoration and growth treatments.
Summer is a time for fun in the sun, but the heat and humidity can also wreak havoc on your skin. From itchy rashes to unwanted pigmentation, several skin conditions become more prevalent during these warmer months.
Breast cancer: Post menopausal endocrine therapyDr. Sumit KUMAR
Breast cancer in postmenopausal women with hormone receptor-positive (HR+) status is a common and complex condition that necessitates a multifaceted approach to management. HR+ breast cancer means that the cancer cells grow in response to hormones such as estrogen and progesterone. This subtype is prevalent among postmenopausal women and typically exhibits a more indolent course compared to other forms of breast cancer, which allows for a variety of treatment options.
Diagnosis and Staging
The diagnosis of HR+ breast cancer begins with clinical evaluation, imaging, and biopsy. Imaging modalities such as mammography, ultrasound, and MRI help in assessing the extent of the disease. Histopathological examination and immunohistochemical staining of the biopsy sample confirm the diagnosis and hormone receptor status by identifying the presence of estrogen receptors (ER) and progesterone receptors (PR) on the tumor cells.
Staging involves determining the size of the tumor (T), the involvement of regional lymph nodes (N), and the presence of distant metastasis (M). The American Joint Committee on Cancer (AJCC) staging system is commonly used. Accurate staging is critical as it guides treatment decisions.
Treatment Options
Endocrine Therapy
Endocrine therapy is the cornerstone of treatment for HR+ breast cancer in postmenopausal women. The primary goal is to reduce the levels of estrogen or block its effects on cancer cells. Commonly used agents include:
Selective Estrogen Receptor Modulators (SERMs): Tamoxifen is a SERM that binds to estrogen receptors, blocking estrogen from stimulating breast cancer cells. It is effective but may have side effects such as increased risk of endometrial cancer and thromboembolic events.
Aromatase Inhibitors (AIs): These drugs, including anastrozole, letrozole, and exemestane, lower estrogen levels by inhibiting the aromatase enzyme, which converts androgens to estrogen in peripheral tissues. AIs are generally preferred in postmenopausal women due to their efficacy and safety profile compared to tamoxifen.
Selective Estrogen Receptor Downregulators (SERDs): Fulvestrant is a SERD that degrades estrogen receptors and is used in cases where resistance to other endocrine therapies develops.
Combination Therapies
Combining endocrine therapy with other treatments enhances efficacy. Examples include:
Endocrine Therapy with CDK4/6 Inhibitors: Palbociclib, ribociclib, and abemaciclib are CDK4/6 inhibitors that, when combined with endocrine therapy, significantly improve progression-free survival in advanced HR+ breast cancer.
Endocrine Therapy with mTOR Inhibitors: Everolimus, an mTOR inhibitor, can be added to endocrine therapy for patients who have developed resistance to aromatase inhibitors.
Chemotherapy
Chemotherapy is generally reserved for patients with high-risk features, such as large tumor size, high-grade histology, or extensive lymph node involvement. Regimens often include anthracyclines and taxanes.
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Cell Therapy Expansion and Challenges in Autoimmune DiseaseHealth Advances
There is increasing confidence that cell therapies will soon play a role in the treatment of autoimmune disorders, but the extent of this impact remains to be seen. Early readouts on autologous CAR-Ts in lupus are encouraging, but manufacturing and cost limitations are likely to restrict access to highly refractory patients. Allogeneic CAR-Ts have the potential to broaden access to earlier lines of treatment due to their inherent cost benefits, however they will need to demonstrate comparable or improved efficacy to established modalities.
In addition to infrastructure and capacity constraints, CAR-Ts face a very different risk-benefit dynamic in autoimmune compared to oncology, highlighting the need for tolerable therapies with low adverse event risk. CAR-NK and Treg-based therapies are also being developed in certain autoimmune disorders and may demonstrate favorable safety profiles. Several novel non-cell therapies such as bispecific antibodies, nanobodies, and RNAi drugs, may also offer future alternative competitive solutions with variable value propositions.
Widespread adoption of cell therapies will not only require strong efficacy and safety data, but also adapted pricing and access strategies. At oncology-based price points, CAR-Ts are unlikely to achieve broad market access in autoimmune disorders, with eligible patient populations that are potentially orders of magnitude greater than the number of currently addressable cancer patients. Developers have made strides towards reducing cell therapy COGS while improving manufacturing efficiency, but payors will inevitably restrict access until more sustainable pricing is achieved.
Despite these headwinds, industry leaders and investors remain confident that cell therapies are poised to address significant unmet need in patients suffering from autoimmune disorders. However, the extent of this impact on the treatment landscape remains to be seen, as the industry rapidly approaches an inflection point.
8 Surprising Reasons To Meditate 40 Minutes A Day That Can Change Your Life.pptxHolistified Wellness
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Ageing, the Elderly, Gerontology and Public Health
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan Geissler
1. Patient Advocates
in Cancer Research:
European Patients‟ Perspective
ISOQOL 19th ANNUAL CONFERENCE, BUDAPEST, 26 OCT 2012
JAN GEISSLER
Director, European Patients’ Academy on Therapeutic Innovation (EUPATI)
Co-founder, CML Advocates Network / Leukemia Patient Advocates Foundation
Secretary, European Forum For Good Clinical Practice
Member, EU Committee of Experts for Rare Diseases (EUCERD)
2. We„re excited about progress in
tackling cancer… but…
Molecular targets/pathways New approaches
needed
Genome sequencing
Drug
Translational research Drug+Pathway
Personalized medicine +Biomarker
• Small trial populations New trial design
• Biomarkers and recruitment
HTA, QoL, endpoints, New collaboration
comparators models
Healthcare budgets vs
Patients in
drug pricing research
2
3. There is no „magic bullet“
for most patients yet
“Success stories” available only to
small numbers of rare cancers
Patients in urgent need of
therapeutic innovation
5-year survival in cancer (USA, 2008)
National Cancer Institute RareCare (Gatta et al, 2012)
4. Patients with rare cancers
face specific challenges
1. Prevention and screening mostly irrelevant
2. Late or incorrect diagnosis
3. Experienced doctor not available locally,
lack of access to clinical expertise
4. Lack of appropriate therapies
5. Slowness of research (lack
of trials & commercial interest),
6. Facing stigma and inequity
7. Lack of information & local
patient groups
5. In addition, public misperception of
clinical trials delay research
?
Lack of public confidence…
= delayed / lack of trial recruitment
= delayed generation of meaningful
data
= slow progress, lack of research
in Europe
6. What patients want to know
about clinical trials
Knowing that trials exist at all
Benefits of participation in trials:
• Personal benefit: Innovative treatment,
closer monitoring, better QoL,
chance for response, "last resort"
• Altruistic reasons: Achieving progress
beyond their own case
7. What patients need to know
about RISKS in clinical trials
Medical risk of uncertain therapies
Quality of life, unpleasant diagnostics
Paediatric trials: administration
Influence on family life (intensity of care)
Financial impact (travel), ability to work (patient & carers)
Fertility
Protection from stigma and discrimination (use of data)
Patient groups: the only stakeholder with the
big picture on QoL of a patient population
8. Doctor/patient perception on
impact on QoL differs
Detecting Myeloma, ways to shortening an often painful and tedious patient odyssey: results from an international
survey. Myeloma Euronet (2009). 314 physicians & nurses, 260 patients & carers, 43 countries
9. Doctor/patient perception on
management of side effects differs
Detecting Myeloma, ways to shortening an often painful and tedious patient odyssey: results from an international
survey. Myeloma Euronet (2009). 314 physicians & nurses, 260 patients & carers, 43 countries
10. Patients – as partners of
researchers
“ More needs to be done: rare cancers will never be a
priority unless the patients make it one. Patients
themselves must therefore play a larger role in
driving forward the search for therapies. They are „
able to see connections that have eluded scientists.
11. Collaborative cancer research:
More participation of patient groups
Before research starts
• Influencing public health / research policy
• Identification of indications, therapies, patient population, gaps
• Uncovering ethical and risk/benefit dilemmas
• Assessing endpoints (PFS vs OS)
While research is done
• Managing of expectations: hope or hype Driving force
• Patient recruitment, compliance Co-researcher
• Side effect monitoring
Reviewer
• Patient & public confidence in clinical research
Advisor
After conclusion of research
Information provider
• Quality of life monitoring in “the field”
• Assessment of (cost-)effectiveness Research subject
• Improving compliance Source: PatientPartner FP7
Project (2010)
12. Opportunities improving
informed consent
Patient-driven
optimization
of informed
consent
ToC, Glossary,
study flow chart,
terminology,
video
EudraCT-Nr. 2010-024262-22, „TIGER“ Study in CML
13. CML Advocates Network:
Community-driven adherence
research
Pilot survey completed in 2011,
phase II in Sept 2012 in
12 languages
Goal:
CML treatment adherence
(intentional, non-intentional)
Interaction with physician
(Use of) adherence tools
1000 patients in 3 weeks,
3000 until EOY2012
14. Patient-driven biobanking in cancer
• PATH - Patients Tumorbank of Hope
– Initiated by breast cancer patient group
MAMAZONE (DE)
– Samples stored for research and individual use
– Collected >5475 samples in 7 breast centers to date
• The GIST Collaborative Tissue Bank
– Initiated by the Life Raft Group (USA)
– Patients receive mutational testing
on the Primary Mutation
15. Self-reported QoL data accelerating
clinical discovery
“the first real-time, real-
world, open and non-
blinded, patient-driven trial”
…"Although observational
studies using un-blinded data
are not a substitute for double-
blind randomized control trials,
this study reached the same
conclusion as subsequent
randomized trials”
…”Accelerating clinical
discovery and evaluating the
effectiveness of drugs already
in use."
16. Unmet need of patient and public on
information on medicines R&D
Patients…
• seek up-to-date, credible, understandable information
about innovation in treatments
• are largely unaware about clinical trials, translational
research, personalized medicine, pharmaco-economics,
their key role
Patient advocates…
• like to advise on protocol design, informed consent,
ethical review, marketing authorization, value
assessment, health policy
• lack the education and training required to participate
as a partner in medicines R&D
17. EUPATI: Empowering
patients on medical R&D
Launched Feb 2012, runs for 5 years,
29 consortium members,
PPP of EU Commission and EFPIA
will develop and provide, objective, credible,
correct, up-to-date knowledge
about medicines R&D
will build competencies
& expert capacity among patients & public
will facilitate patient involvement in R&D to support
industry, academia, authorities and ethics committees
18. Areas covered by EUPATI
1. Medicines development process
from research to approval
2. Personalized and predictive medicine
3. Drug safety and risk/benefit assessment
of medicines
4. Pharmaco-economics, health economics and health
technology assessment
5. Design and objectives of clinical trials
(& roles of stakeholders) …and NOT:
develop indication-
6. Patients roles & responsibilities in or therapy-specific
medicines development information!
19. Audiences: advocacy leaders
and the public at large
100
EUPATI Certificate patient
Training Programme advocates
English
French
12.000 German
EUPATI Educational patient Spanish
Toolbox advocates Polish
Italian
Russian
EUPATI 100.000
Internet Library individuals
20. Summary
Key goal of research:
To get better answers to cancer patients more quickly.
Patient participation makes research more successful
• make design of trials patient-centric
• communication of trials with patients,
improving "informed consent"
• improve quality of life assessment
Training of patient groups to foster cooperation with
clinicians, cancer researchers, authorities, industry is
essential!
21. Get to know us!
Web:
www.patientsacademy.eu
Jan Geissler
EUPATI Director
Twitter: @eupatients
jan@patientsacademy.eu as well as: